NOLA in September?
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this morning, 2 weeks post op, it took me 2 hours to get up and ready for my day... I had to decompress, then shower, then re-bandage, dress and take breaks in between all of this cause I kept getting winded... I was at my onc on Tuesday and they drew blood and it came back that I am anemic... so I need to work on that. And I still have 3 drains... ugh.
About the money, it comes down to who is the insurance company.... I have Three Rivers with my Aetna and my claim is treated like IN Network, although I believe it will work off my out-of-network coinsurance (not deductible), but I can't be billed the above and beyond because there is a contract with the doctor and Three Rivers... That is the key here... my max I will pay for all of it, this calendar year is $2500... and hospital was free... I feel super fortunate, and received excellent care... I can't stop telling people about SCSH... it is an amazing place.
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OH.. and when did the feeling of the heavy breast, swollen and firm disappear for you all?
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Dana -- I will be there for surgery on 23rd. You said 2 weeks for Stage 2. Perhaps we will cross paths? Hope so! Not sure of the insurance thing ... I guess I will leave that to the experts. Did find that there is a little known program with my insurance that if you have to travel more than 30 miles to get an in-plan provider that they will consider an out of plan provider as in plan. (IS anyone as confused as I am?) Anyway, it may well be, given that autologous surgeries are NOT common and I am from a very rural area, that even the current oop that I just paid will be reimbursed as there will be full coverage for out of plan provider because there are no IN Plan providers anywhere near me. Fingers crossed. Regardless, whatever it costs, I WILL have my surgery in NOLA with Dr. D. I will worry about costs later ... when I am "restored" and whole! Biggest problem now is finding support to help out just out of hospital. Have a dear friend fron England who is planning on flying in! Now THAT's a friend! And his cousin who lives in AZ has offered to be sure that I get home safely. Not used to this kind of love and selflessness -- it is usually me giving up everything to help others. Blessed, I am, truly blessed. Got all of you, got Dr. D, got the Center, an embarassment of 'riches'! Thanks!
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Betsy, I am 12 weeks out and I was just thinking today that my breasts are feeling like breasts! That heavy, full of milk, swollen feeling lasted for the first several weeks. Then I felt some firmness on my cancer side, but that has softened up weeks ago. After I didn't feel swollen and 'full of milk' I felt like I was wearing a life jacket---a heaviness that I felt against my chest, not part of my chest. So I don't know how long exactly that heaviness has been gone. I can't recall when it felt 'gone' but I was pleasantly surprised today when 'my breasts feel like breasts' crossed my mind today.
Not that I have feeling in my breasts, but that they feel like a part of my body instead of pillows sewn on. I'm anemic as well, Betsy, from the AC. I'm hoping Taxol doesn't let it go down any more. I'm really hoping my counts start going up during Taxol, but that may be wishful thinking. Celtic, I think there is something that flows through us when we find our NOLA docs. The love and goodness flows freely! For me, it's like I become in tune with what's best for me: I can ask, I can seek, I can say yes, I can say no, I talk, I can listen. Accept the riches!
I've been procrastinating the past 2 weeks to call NOLA to set up Stage 2!! It will have to be in Dec, 3 months after chemo. I've put it on my calendar to make the call tomorrow!! First I need to talk to Stacey, then go about scheduling. It makes me nervous, I guess. Chemopause and chemobrain make me feel off balance when I start talking out loud. I know everyone is so nice---it's just me!
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Cider8 - My hemoglobin stabalized and then improved slightly on Taxol. It's not as hard on the bone marrow as AC. I was definitely less worn out on Taxol but I developed neuropathy after my 2nd dose. I didn't ask my MO oncology about things to do that can prevent neuropathy but I wish I had. I later learned that Vitamin B6 100mg twice a day, L-acytel Carnitine and L-Glutamine have all been studies in decreasing neuropathy with Taxanes. Definitely ask your doctor about it as being proactive is so important!
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Oh gosh. I can't imagine going straight into chemo. You guys are WARRIORS!!!! I've been done with my cancer treatment for a year. I had chemo then mx with tissue expander then radiation. And now finally reconstruction. But I'm going inti this surgery strong and I'm not facing more treatments. Everyone's journey is so different. I had 12 rounds of taxol first and I did take a b-complex vitamin to protect from neuropathy. Then I had 3 rounds of FAC. The FAC was the tougher of the two chemos for me, but then again I had it after 3 months of chemo.
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i was taking a B50 complex to help with numbness after chemo... never had too much neuropathy: I was on taxotere.
as for insurance, because my insurance will cover the surgery, I never needed to fill out a financial means paper, as I had a cap anyway.. i am lucky.
OK... so here's my latest problem... My right breast has very thin skin from the MX and has open wounds that they have had me dressing with telfa and A&D ointment,.. its been improveing although still at two weeks out bloody... so last night I take off the dressing and I just dripping blood, it was everywhere... so I call Laura and she said that at 2 weeks, the glue starts to come off andbleeding can occur and to put a lot of bandages in the bra and compress til it stops... that worked until this morning.. I got up and sat in a chair and realized my whole nightgown front was covered in blood... i have repeated the compression, but ugh... anyone have anything like this?
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And Paula... thanks for the update... that is reassuring
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Betsy - I don't have any experience with open breast wounds but wanted to add words of encouragement. I hope that added bandages in the bra work!
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toomuch... I sent Laura photos and she changed my treatment, stopping the A&D ointment and using betadine and lots of bandages... I too hope it helps.
And sorry I never made it to the hospital to visit you... When I was at the Center on Monday, Clay the driver was waiting for me to take me back to the Homewood Suites... I didn"t want to hold him up.
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Hey Celtic - When are you arriving in NOLA? I'll be there on 8/13 and we are planning to leave on 8/19 since stage 2 is supposed to be shorter and easier. So it seems like I might miss you, unless you are coming in a couple days early...let me know!
As far as insurance goes, I have BCBS and I'm told it's VERY good (I have no copays, and no charge for any scripts) but it's still out of network for NOLA so I still needed to pay 20% out of pocket for both stages of my DIEP - total was about 15k between both stages. I was able to work with Vickie a bit to get some "assistance" to get the amount down ~$1,700 without having to submit financial paperwork. I was lucky that my parents agreed to pay half the surgery fees with me so it was more doable. However there are definitely options for asking for financial assistance and financing if that makes more sense for you. I'm pretty sure they work with you as much as possible.
Betsy - I had that "heavy breast" feeling too, probably for about 5 weeks then it started to dissipate and moved to just happening late in the day or after I was fatigued. I can still feel it a bit a night before I go to bed, especially if I've had a long day of running around, but I would say it got dramatically better around the 5-6 week mark. Hoping your wound gets better soon with the new treatment.
~dana
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Oh Betsy. I'm sorry about the bleeding. That must be scary. Of course it had to happen after you got back home.
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Brandy... You can say that again... luckily, NOLA has been responsive and the bleeding has subsided for now... You are very lucky though to be healing so well... I do think my breast drain may be ready to come out... I will give it today to get numbers.
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I need some feedback. How much did your breast size decrease after the swelling went away? How many weeks post op do you think you can tell what size your breasts really are? I was really small breasted and my flaps weighed 2 1/2 times what my breasts weighed. Dr. S told me that they would have to do that in order to get viable flaps. But I'm wondering how big these ladies will look when the swelling goes down. I know that they can be reduced at stage 2 but it's a little awkward returning to work large breasted, going out on leave again and coming back small breasted. Anyone else worry about stuff like this?
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Beverly.. Just got my Stage 2 date... November 3 with Dr Dellacroce.
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toomuch: with swelling immediately after stage 1 I was a full DDDD cup, which was my original size. About 2 months later I was DDD. 1.5 years later I'm a full D/small DD. Most of that was swelling (or possibly fat necrosis dissolving), but she did a lift in stage 2 (7 months ago) that probably made them a little smaller too.
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Thank you ladies for holding my hand thru this. So the wonderful people at NOLA have worked out a financial plan that works for us. ( I will be eternally grateful ).
Laura, thanks for the step by step, that is exactly what i needed so I could wrap my fuzzy brain around it
I will know more on Monday.
Huggs and smiles to all
lisa
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Toomuch, thanks for the supplement info re: neuropathy. I normally take a high potentcy B complex. I'll have to mosey on over to Whole Foods for the other things. I've been taking prenatal multi vitamin (simply for the higher nutrient and iron amounts) but I'm just about out. My MO suggested maybe taking a separate iron supplement. So I have a little list now...
Toomuch, my breasts were large (to me!) about an F. Dr S put the same amount in, as I told him I wanted to be C+ in the end. They felt HUGE at postop! I told him they felt ginormous. He told me there was only 10-15% swelling. I think they've gone down from the F cup, the cancer side even more. But not a whole lot. I haven't thought much about how other people see my changing size, as I freely talk about the surgery I have had and will have. I'm also a stay at home mom, so I don't feel that work environment pressure.
Betsy, I did not experience the bleeding as you are. Just stay all over it keeping in contact with Laura. I hope it does continue to heal at a resonable rate. And yay for Stage 2 scheduled!
I called Stacy today. She emailed me my op report, so I had fun reading that. I need to send her my blood counts (from chemo visits); my office sent one I think. She suggested I tell them every time. I told her I wanted to schedule stage 2. I'll be cutting it close in Dec for the 3 month mark. I should find out soon when I'm penciled in. I feel confident that I'll be recouped enough by then so I can have surgery before the end of the year.
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@demouement -- I wll fly in the 21st. We will just miss each other! :-(
@ Betsy -- WOW! you are SO much braver than I!! I would have been heading for the ER in full panic. Hope the wounds close and heal soon!
Re: insurance, I have an oop of $1500. I am not sure that will be all, but somehow (if I have to hold bake sales, LOL!) I WILL have this done. I will be whole. I am of a mind to try to form a foundation to support women with expenses when they make choices the insurance company doesn't like! Sick to death of medical insurance companies short-shrifting women ... if this were testicular or penile, the story would be wholly different! IMHO, of course. Bless the docs at CRBS for their commitment to OUR health and well-being.
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Hi Celtic...Your OOP is $1500 ? Is that Out of network? Mine worked off of my OUT of Network, I believe, but I was also very fortunate to be considered IN- network sort of... so I only pay my max out of pocket...although so far everything has been processed out of my IN network max, of which only $600 remain... time will tell.
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hi ladies...havent been on in awhile. just moved in new house and been very busy! hope all are doing well, and new ladies headed to NOLA? Good luck and and enjoy being treated like a princess!
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Hi Betsy,
I had (actually have) an abrasion under my left breast due to the thin skin issue. It probably was about 2 weeks out when it began oozing, not so much bleeding. The Center had me stop putting bacitracin on it and just use betadine twice a day with a Telfa pad. I am now 9 weeks out and it is much improved but still there. It has formed a scab and I am not going to pick at that. It will fall off when it's ready. After about 5 or 6 weeks out, it had not improved much so I started taking a zinc supplement. One week later I saw substantial improvement so I have been keeping that in my daily regimen. I do still have hard spots (likely fat necrosis) in that same breast. Dr. Sullivan says we will wait and see if it softens from now until my stage 2. As long as he fixes it then, I'm fine.
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Zinc... Someone else mentioned that too... That seems like a long time for your wound to be oozy... Mine continues to bleed but i managed to keep it from bleeding during the day with clothes and bandages on... Certainly makes showering a challenge... I had a wash cloth all ready for when i was done for compression while i spasdically got my bra and all bandages on, and did the betadine... And i still have a drain on that side... Its a circus act for sure.
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Interesting discussion on how large your breasts felt after surgery, particularly for me. I am uni-lateral, and had a tissue expander inserted and filled (and can't WAIT for that puppy to be a memory -- a coconut under the skin hard as it can be!). Right now I have an up and down chest -- the mastectomy side is tight and upright and big and the other side is gravity challenged and, unless stuffed into a "push-up" bra, looks flat and about 4 inches lower than the right! I amy be a one boob wonder after the surgery if some of you ended up DDDDs and such. I am a C-D (when all hangs right!). Gonna take some kinda miracle in Stage 2 for sure! But I have faith -- I've seen the unilateral photos from the Center and I don't think I could ask for more. Am very excited that in 2 weeks I will head to NOLA, but there is SO much to do that I feel somewhat frantic inside! Gonna have to step up the workouts and make'em harder to burn off the inner "AAACCCCKKKK!" about all of those loose ends!
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Betsy, I'm so sorry. You're such a brave woman. I admire you for being so helpful to everyone else on the board by sharing your experiences. Thank you for that.
I made it home yesterday. I flew by myself and the total trip took 6 hours door to door. My husband called the airline and arranged wheel chair assistance and they were fabulous. I was taken by wheel chair through security and wheeled right to the plane. At my layover in Houston they took me by wheel chair across that HUGE airport to my connecting flight and then wheeled me right to my family in West Palm. I tipped each wheel chair driver $5. I'm not sure if this is customary, but it was the best I could do. When my husband called, the airline also moved my seats to the front and gavee aisle seating the whole way. It was easy and everyone was helpful. I was definitely the youngest one in the "wheel chair Crew" to Palm beach. It's an interesting perspective to experience at 37.
Today I'm starting my book. I've decided that I'm going to try my hardest to write a book to help people along in their cancer journey. I was doubtful that I could do it until I saw that "SNOOKIE" of the "Jersy Shore" had written a book and I thought "well Damn, if she can do it I can"
I'm starting today! There - I have proclaimed it! It will be so!0 -
ok, am leaving on a jet plane....on my way to NOLA, will check in later down there. have been sick, got better, then sick again. damn kids and viruses and prob my compromised immune system since am only 5 weeks out from chemo...odd, i seem to be getting things going wrong from chemo NOW, that i did not have before when on and during chemo...like a nail started to go black!!..go figure. betsy, think you are about 6 weeks ahead of me with last chemo...i wonder...am reading all your trials with thin skin and i sure as hell have thin skin on my chest too( hey, i come from australia) and also just how the chemo kind of thins your skin, bruise so easy..etc etc. anyway, anyway, feeling a little anxious but here we go...my surgery is tues 7 am. at the center for preop monday, staying at the hospital until friday...and then to homewood until following wednesday...
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Hi Rosemary... You will be fine... I think my thin skin had more to do with the MX and digging for my port than chemo... The skin has improved tremendously... but unfortunately, with all the ointment, the skin has been moist and made the suture incision healing a bit challenged... at least with bandages and compression, I can keep the incision bleeding at bay.
My breast drain is bascially outputing nothing, but what it does output is red, so Laura said the drain stays until it isn't red anymore. I think I will have the drain til there is NO output at all.
Brandy.. you just amaze me... travelling alone? And with connections? I didn't think they even allowed that...You must be a wonder woman (in my eyes at least). Kudos to you!! My family and friends all say I should write a book too... I have a LONG blog on my AvonWalk website, but not sure I have the time or energy for a book... unless it was a booklet...LOL.
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@Brandy -- wow, um, wow! 9 days post-op and on your own flying home!! I should be just fine then as I will stay with family for nearly 3 weeks after surgery. Totally amazed and hope that you are resting comfortably at home in your own bed with the love and caring of family and friends.
@louis13 -- Know we are "winging" in with you, loaded with well wishes, prayers and healing thoughts! Will be looking for your after post as I am not far behind!
What WOULD I have done without you all? How lucky I was to find the thread and to have learned so much from some pretty doggoned incredible women!!
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Rosemary - I will be at the center around 3pm on Monday for a follow-up appointment. What time will you be there for preop?
Betsy - I'm glad that you've been able to keep the bleeding under control. The drain thing is so wierd. I have one that's putting out not that much but it looks like frank blood while the other is putting out tons of clear orange fluid. I fear that I will have my hip drains for many weeks.
Brandy - You are one brave women traveling home alone. I couldn't imagine tackling that! It must feel good to be home!
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toomuch... my left breast drain was pulled... my right breast drain has virtually no output but is dark red so they want me to keep it in and both hips are outputting 60-110 cc per day but are straw colored... it is for sure weird.
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